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I cared for my mother (dementia) until she passed last year. I am still caring for my dad (Parkinson's) and my husband (dementia). I am past the breaking point. I feel trapped. My husband's SS pays our monthly mortgage and my dad pays our bills. If I put my husband in a nursing home, my dad and I will be without a place to live. My husband is growing increasingly difficult and doing things that frustrate me beyond words. This morning I found that he had taken a knife to one of our night-stands. I asked him what happened and he said, "I had to get something off of it." Then, as I was using the bathroom sink, I noticed it was stopped up - he has stuffed food and paper down the drain and in the overflow hole. I could go on and on, but what's the point? I'm dealing with an irrational mind and I need advice. Thank you for listening......

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Why do you believe you will be left homeless?

Medicaid has a spousal impoverishment clause that will allow you to remain in your home.

Consult a certified eldercare attorney asap.
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dlpandjep Jul 2021
Why is it that whenever i reply to a comment, there is a blank - or partial reply at first? What am I doing wrong?
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I want to suggest this gently, and with love, as a fellow believer in God and his help… You said in your profile, “I gladly chose to care for my family as I believe that is what God would have me to do.” Consider that God also wants to help *you* to do this. Caring for your family doesn’t mean you have to shut the doors to all other helpers to struggle alone with too great a load. Have you considered that God’s helpers are waiting for you and your loved ones at that nursing home or assisted living? Try not to let pride in the idea of doing it all alone by yourself stand in the way of accepting the help that is waiting for you and your loved ones.
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dlpandjep Jul 2021
Bless you. I am realizing this. For years, people advised me to leave my abusive husband, but I felt I was obligated to stay. I've changed my mind. A person cannot serve God and share His love if they are living in turmoil. Now I'm caring for this man and it has led to resentment and bitterness. At 67, I'm asking myself just what's ahead for me and I don't like what I see. I am not prideful, I always trusted people to do the right thing - especially when it's a spouse. Geez, how can anyone be so naive? (Or however it's spelled)
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When my mother required nursing home care and ran out of money Medicaid paid for her care. This in no way left my father without a home or without money. That’s just not how it works. My dad was only required to sell one car, other than that his finances didn’t change. When you’re as burned out as you are, no judgment, it happens to most people, you’re not good anymore as a caregiver and need to make a change. Please consult an elder care attorney, it’s often less expensive than you might think, and together come up with a new plan
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dlpandjep Jul 2021
You're so right! People are noticing a change in me. I am not the happy person I once was. I know there are plenty of caregivers out there who've been at it a lot longer than I and they haven't become angry. But then, I doubt that they've endured the emotional abuse that I have......

Thank you for commenting. 🤍
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On the practical side, having read your other comments, call your county courthouse and ask to talk to someone there about what to do. If it is like my home county (small and rural) they do have a person to help, maybe just with advice but also maybe with actual helping and doing.
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dlpandjep Jul 2021
Thank you Goddatter. 🤍
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DLP, if your husbandbalready has "community Medicaid" does he have a caseworker?

It shouldn't be too difficult to switch from Community Medicaid to Long Term Care Medicaid.

Your County, by law, has an Area Agency on Aging. They might also be abgiod source of help.

Keep in touch, and sorry for my previous somewhat curt reply. I was stopped at a red light and trying to type fast.
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If you have any assets, you can have them split. DHs split going to his care then applying for Medicaid after its spent down. You will get part or all of your combined monthly income to live on. You get the house and a car. You are the Community Spouse. Not sure how Dads income will be looked at. A lawyer well versed in Medicaid should be able to help you.
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AT1234 Jul 2021
She def will not be left homeless or without an income. It’s a federal law community spousal income, or something like that. I think this scenario is more common than we know.
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Bless you, you are carrying a heavy load. You really do need to get your abusive husband out of the home for your sake and your father's sake.

The biggest fear I had when my parents 1st entered independent living (IL) was that dad would need SNC and mom would be left destitute. They moved to assisted living (AL) because of dad's falls. At 91 he had medical issues pop up on top of his dementias. We got him on hospice but a few weeks later he was too weak to stay in AL and off to SN he went. However, after getting dad on medicaid it was found mom would have enough money to continue to live in AL - actually today she just moved back to IL.

So if you need to get him into SNC but make sure to call 911 if he becomes abusive. You need to take care of yourself, because if you don't take care of yourself you won't be any good to your dad. In the short term see what resources are available to your husband and father for some in-home assistance.

I pray you are blessed with peace, grace and love.
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Boy, you've been dealt quite a hand here! No wonder you're burnt out!

Your husband's behaviors sound pretty advanced to me. I think it's apparent that it is time for him to live somewhere else now. I'm not sure how the financial side will work out but maybe you and dad will have to sell the house and move into senior housing or something affordable like that. While that might now be ideal, I think it sounds much nicer than the situation you are currently dealing with.
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Why would you lose your place to live if you put your husband in a nursing home? Please see a Medicaid attorney so you know the facts. There are so, so many untruths that are put forward (on this forum, too) that are simply NOT the case. Seek legal advice from a Medicaid attorney (NOT an Elder Law Attorney -- big difference) TODAY so you can be informed of what your rights are and your right to live in your home even if husband is in nursing home, please.
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wolflover451 Jul 2021
good advise, however we got an Elder care attorney when our parents needed it and he WAS up-to-date with Medicaid information as well, so I guess it depends on who you get. But our Elder attorney was ranked the highest in PA and he is very good.
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The only answer for you is medication which will calm him and reduce his anxiety. I do hope you have the possibility of a day program as we begin to reopen facilities post COVID-19.
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dlpandjep Jul 2021
No - no day programs. We do have a "satellite" Senior Center, but even they offer no help. Listen to his latest: the neighbor's cat tore our screen in several places and it looked bad. I went in the other morning to find that my husband had taken a knife to the tears and "cut them out." Unbelievable. Here we go again.....
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My stress has turned to anger also, then I feel bad, and I have decided that my wife doesn't even remember that I got angry, so now do not feel bad about letting my anger out. *it is only yelling once in a while, I used to feel bad but I don't anymore I don't stress myself out over it. She has started to put things like pictures, pieces of food, etc in her depends and when I ask her why she tells me so she does not lose it. All day long she wants to go home, wants to go out, but she is disabled and it is very difficult to get her out, and frankly I do not want to go out. There is no ryhme or reason to what they do. I guess we just have to feel trapped, and try to do the best we can? I am sorry you are in the situation you are in and all I can do is send positive thoughts for your well being. Let's eat well, take care of ourselves the best we can, enjoy simple things of live like the sunshine, the rain, the wind. I do not know what else, to do, and actually I do not know what to do. I do not know you, but I am thinking of you.
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CarynAnn Jul 2021
Dear Ellwood970. What a beautiful response. I know what you mean about the yelling once in a while to let the anger out. We're all human. And we do have to try to take care of ourselves and appreciate the simple things. Thinking of all you and the rest of the folks on this forum and wishing us all some peace, love, and tranquility. We are all doing the best we know how.
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Matthew 11:28. "Come to Me, all you who labor and are heavy laden, and I will give you rest."
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BurntCaregiver Jul 2021
Vito8675309,

Please stop. God isn't going to solve the poster's problem. A lot of outside help or a nursing home will.
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All the responses here reflect our old entrenched attitudes toward caregiving. It used to be dumped entirely on women and, of course, unpaid. Women have been the “beasts of unpaid burden” for centuries! This is no longer tenable: one person cannot do it all!! And it should be respected enough to merit decent compensation. You have to know your limits and make those limits known! And expect & GET adequate compensation for what you are able to do. Caregiving & service industries are essential to a society’s wellbeing and should be so regarded!
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get in touch with an elder care attorney ASAP to find out your options. Make sure they know everything about the finances but before YOU die before your father and husband (which could happen).......they will still end up in NH which it sounds like they should be. What would have happened if your father took that knife and stabbed either your or your husband in your sleep, with him thinking that you were intruders? then what?? get rid or put knives (scissors,etc) way out of reach or under lock and key. YOU are going to have more expenses than what you want with them both staying at home over the next couple years. Wishing you luck.
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I read the comments written so far and I have great empathy for you and others in the same situation. I too realize that if my husband's income is taken to care for him elsewhere that I can't live on my social security. Yes, I can stay in the house.
I called Social Services where I live and a social worker helped me understand that certain assets would be used first to pay for his care. Example-our whole life insurance and a small piece of land that is part of our home (back yard area we bought after building our home).

The social worker said they have a way of using part of his money to assist with household expenses. The 2nd thing I have done recently was to ask for help from my doctor (thru Medicare) to care for my husband as the disease has progressed. They sent a nurse 3 times, an aide 2x a week for 3 weeks, and a therapist who helped us both. I don't qualify again for this service until my assets are liquidated - or I can pay for them from the assets.

I have used part of the assets to complete handicap areas in our homes along with repairs to the home. What I write now is very personal to me. Many might have negative responses to this - so if you are one of them - please refrain from raining on my parade.

Faith is something one cannot inherit or borrow. You own it for yourself. I have grown close to my Heavenly Father during this journey and I realize I cannot do this in my own strength. Knowing that He will walk with me through these tough days ahead is very comforting.

The therapist suggested I find friends who can be helpful as my husband and I journey through this valley. I have found support through Aging Care, there is an app for AZ, there are many groups you can call with prayer requests, etc. I have three friends I can talk to on the phone and they do come by occasionally to visit.

The most important thing is to be safe. I have safety locks ready to put on drawers and cabinets, I have removed firearms and anything else that I feel could be a threat. I have alarms on the doors, motion lights for the bedroom and bath. I work closely with our PC doctor and there is medication that can be prescribed to calm patients with. I also have a standing prescription for myself should I need to take to calm myself down.

Cross your arms (like an X) over your chest. Squeeze your hands on your arms, and picture something soft and cuddly. Take in a deep breath, hold it in, then slowly release the air. Smile. That's all of us giving you hugs. Stay safe, and make those calls.
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MargaretMcKen Jul 2021
Thank you for a lovely post. Whatever our religious beliefs, anything that gives us strength and consolation is a great help.

I do hope (and usually I think it’s true) that many people just don’t like the religious comments (orders?) along the lines of ‘the Bible says that you have an obligation’…. ‘Faith will solve all your problems’…. 'I promise you' ... 'I guarantee'.... Etc etc.

No-one with any sense would condemn you for taking personal comfort in a belief that helps and does not harm. Very best wishes, Margaret
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If you are reading "Aging Care" and you can help others in any way - I encourage you to do so. Bringing fresh garden vegetables, a casserole, cards, gift baskets etc. I had someone bring dominoes for my husband to match numbers together, and other neat little puzzles etc. A gift card for the caregiver, or a gift basket for the caregiver. My husband likes treats - that I don't buy because I'm diabetic. He is thrilled when it comes in a gift. Recently I ordered smiley mugs from amazon. The box also is a smiley face. That is a little gift to brighten any room. Little is much - every little thing we can do to uplift another is truly a wonderful thing we all can do. Google ideas.
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dlpandjep Jul 2021
I like you - you are a giving, thoughtful person. Your post made me smile. Bless you 🤍
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If you can afford it, have a nurse or home health aid come and relieve you of the responsibility a few times a week so that you can relax and have time for yourself
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I understand. You cannot bear everything. Do you know anyone, like a friend or relative who can man the house for a few hours so you can exercise, get a massage, do anything to relieve the stress? You can also contact Medicaid and ask if you can be paid for your caretaking
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dlpandjep Jul 2021
Thank you Leah. I recently joined a Wellness Center and I'm loving it. I don't dare leave for more than an hour, but the exercise, along with meeting new people has been priceless. I've never been one to "work out" but the benefits, both physically and mentally are so worth it!
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No, if you put your husband into a care facility you will not be left homeless with nowhere to live. You will have to move somewhere else. Like an apartment. You can put your father into a care facility too.
You know already that the assets like the land, insurance policies, and anything else will have to be spent to pay for your husband's care.
Only half of their value. You are entitled to half the proceeds from the sale of your home and the parcel of land the two of you own. You will be able to keep half the value of any asset that you and your husband own jointly. Medicaid will also have to leave you a portion of your husband's social security.
You have options. The only choice is NOT single-handedly do all the care for two people with varying types of dementia 24-hours a day until it kills you, or else you'll be homeless. You have another choice.
Downsize and move into a senior community (some are 55 and older) and they base the rent paid every month on a person's income. Many of these places also include the utilities with the rent.
Check out a few places for yourself. You deserve to have some kind of a life that isn't just the drudgery of caregiving.
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MargaretMcKen Jul 2021
Yup, 'the drudgery of caregiving' does say it all - or certainly most of it. Please look in the mirror before saying that other people are 'awful' (in caps).
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A reverse mortgage may work for you. I do not recommend a reverse mortgage unless you have no other options. However, it sounds like you have vey few options. Worth a look. in any case.
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dlpandjep Jul 2021
We looked into that with AAG. Do not qualify.
Thank you!
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dlpandjep: Imho, you require respite through any means possible, e.g. Visiting Angels, et al, else you fall faint and ill and are good to no one. It appears, for all intents and purposes, that your husband will have to be housed in a facility, the knife discourse being very telling of the unsafeness aspect of his dementia.
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Vito8675309,

What would you call it if not drudgery? Why don't you enlighten us all with your extraordinary gift for vocabulary and tell us what you would call being solely responsible for two adult people with dementia.
It is drudgery. Day in and day out. Drudgery.
I don't know how long you've been a caregiver or what kinds of care situations you've had experience with.
I was an in-home caregiver for almost 25 years and am currently the sole one to my mother who was a not a nice person long before she became elderly.
So, I'm going to go ahead and say that with my level of caregiving experience if I call it drudgery, then that's what it is.
Have a nice day.
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dlpandjep Jul 2021
Oh my - it's people like you that blow my mind! You are right - it does become drudgery. How you continue on is beyond me.

I would say my hat's off to you, but honestly, my heart aches for you. We literally give up our lives to care for those we love. Before my Mother passed, I was changing her dirty - and I do mean dirty - diapers 7 or 8 times a day. I was so broken when she died, that I just fell on my knees beside her bed and stayed there until the EMT's took her. What a way to live......
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Anger and exhaustion are two sides of the same coin, at least they were for me. BUT I adored my husband and wanted him to live as long as possible. I often got my anger out by walking around and telling myself to consider the alternative. I cared for him for three years around the clock alone. He had dementia, was bedridden, diapered, cathetered, and with a feeding tube. I would do it again, although I now know how much of my life I gave up in my (healthy) 702. Get out of the house when you can, try to get respite care to keep the two men safe and out of trouble. Often senior services will cover a sitter to watch over your patient so you can get out.

One thing to look into is if your state has protection for the surviving spouse not to be left broke. It may be that you can continue to collect hubz' social security so as not to leave you destitute or homeless. In Illinois, there is what the state calls "spousal improvrishment protection" where medicaid will cover NH costs and allow you to remain in your home with his Social Security. Good luck. <3
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The fact that you are feeling angry is an indicator that the stress you feel have reached an unhealthy level. You need to consider some other options that nurture all the people in your household: your dad, your husband and yourself.

Start with yourself. As they say on the plane, put your facemask on first. Are you able to get 7-9 hours of good sleep? Are you able to eat 3 healthy meals at a reasonable pace? Do you get some time off to meet your own health needs? Do you get some time daily and weekly away from "caring" so you can "recharge" your batteries? If not, you probably need to expand the care you do to a group of people. Ask for volunteers: family, friends, neighbors, members of your faith community... to help "sit" the guys for a few hours, bring a meal, help clean the house, help with the yard... If you still do not have enough help, consider if you need to "downsize" to a smaller and easier place to take care of.

Next, consider if you can take care of all the needs of your men by yourself. Keep a journal for a week or 2 and list what you do, times you do it and how long it takes. If you notice that you don't have time to do this, you are way too busy and need other care options. Talk to your local social services for your community for assistance. They can determine which types of assistance you, your husband and your father qualify for. Be willing to have an open mind and accept all the help you can get.
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dlpandjep Jul 2021
Very interesting advice. Things I've never considered before. My Dad has Home Health and they check his vitals, overall health and bathe him twice a week. This is a godsend.

Thanks again for making me think - I like the idea of keeping a journal - at least for a month or two. This could be very beneficial. Bless you!
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So sorry for what you are dealing with, I take care of my mom & feel anxiety ridden much of the time,
the more posts I read , the more I realize how we treat our elders like crap in this country ,compared to most progressive countries,
I stick it out ,because my mom was like gold , but I m going to be truthful & say I don t know if I would, if we didn t previously get along,
you would think we d have top notch full time care homes for seniors , maybe if we d tax more of all the Uber rich, we could…
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dlpandjep Jul 2021
Totally understand what you're saying. This small area in WV charges as much as 10K a month for nursing home care. Really???
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I understand completely I take care of my husband that has both dementia and Parkinson’s for the past 7 years . Now in diapers. Has a 9.8 aorta aneurism, heart attack diabetes.
It’s very stressful at times and feels like I’m loosing my mind once in a while .
Please go to you tube put in music for Dementia patients it will also help Parkinsons . It’s amazing what it does to calm them down . Buy
i pods and load them with their favorite music they use to listen to . Dementia patients even remember the words to the songs . It calms them put them in a good mood and will help
you so much . God bless 🙏🙏❤️
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dlpandjep Jul 2021
So thoughtful of you! Music is a great comfort - not just for him, but me as well. My husband sleeps all day and stays up until the wee hours of the morning. Sometimes I get up to hear him singing along with cd's he's playing. He was a good singer in his younger days - now, it's very comical. 😊
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I am not positive, but I think you can keep the SS if he goes in to a nursing home if you need it to live on. A nursing home can answer that question for you. God bless - caring for a loved one is the hardest job ever. Also check in to respite care.
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dlpandjep Jul 2021
Thank you - I'll check into it. As far as respite care, I have two to care for and while my Dad qualifies, my husband doesn't. God bless you as well. 🤍
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You are shouldering a very heavy burden. Ask for help. Get connected with caregiving groups and social workers in your area who can advise you on your options, given your financial situation. Much of what can be done depends on your (and your father and husband's) financial situation. As your loved age, they may need more help. It sounds like your husband needs a dementia-proofed environment and might need 24/7 observation to prevent "accidents" around the house. Lock up knives and all dangerous tools.
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dlpandjep Jul 2021
Interesting that you would mention knives. He keeps cutting things (like his t-shirts) and just about anything else that he finds interesting (who knows what's going through his mind). While my Mother was alive, she would sneak and hide my kitchen knives. I found them hidden all over the place. I still haven't found one of my favorite ones.

I do hide the knives and scissors from him, but he keeps finding replacements. Many, I've never seen before. So sad - not just for the person with dementia, but especially for those of us caring for them. No one should spend their last days "losing their mind!"
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